I was asked and wanted to share with other spinners my story from disability to dancer in hopes that other people might find the healing I did through this shared art we are engaged in.

I walked into my first spinjam in January 2010 mainly because a cute girl, Magpie, asked me for a ride to practice and was trying to convince me that since I used to like to do goth dancing I might like fans or hooping. When I walked into that gymnasium I remember thinking I was totally suckered into giving her a ride. I looked around the room seeing jugglers, acrobats, spinners, and dancers. What they were doing were things I had never seen before outside of Cirque Du Soleil, and I felt I couldn’t possibly have anything in common with them! After all, I was barely able to walk due to a recent flare-up of my MS making me unable to tell if my legs were working or not, and these people were doing superhuman feats of athleticism. Still, I was there, and had promised to give Magpie a ride home too, so I was stuck for a while. I figured I never learned how to hula hoop as a kid, and it seemed the easiest thing to learn since kids can do it, so why not? I borrowed a hoop from a tall, bald, crazy man named Jax, and after an hour of practice I was tickled pink that I was able to get it around about 12 times. I was told later by those who saw me that I did look kind of ridiculous, but that people did notice that I never stopped trying and that was something.

A week later I borrowed(bought?) my first hoop. I can’t explain it but I just wanted to be able to do it. Something about learning this simple thing kids on the playground could do, and maybe something about that motion just compelled me to continue. I still couldn’t feel anything below the waist and was relying mostly on sight to judge timing, but I knew that the flare-up was abating and I would most likely be able to feel my legs again in a couple weeks. I made the most of it. I hooped and I hooped and I hooped. I hooped for 6 hours straight one day until my stomach was visible in spasm and had gone taut from the muscle cramps. I didn’t care. I couldn’t feel my body, so why stop? I am sure many new hoopers would be envious to learn I never had to deal with the painful part of the bruises that come when you are learning, though I did have a solid ring of color around my body when I was done. I had learned to hoop! Much sooner than I thought I could feel my legs, and now that I could feel the hoop I was starting to really get the hang of it.

So, what next? Well I certainly couldn’t do those vortex moves or hoop on my chest, but maybe I could learn how to walk and hoop at the same time. That came easier than expected. Then, well maybe I can try that vortex move, hmm… that came awfully easy too. Then I tried chest hooping, knee hooping, isolations, walk-throughs, behind the back elbow transfers, and so on. I learned by watching others. I was still shy and kind of an anomaly in the spinjams because of my weight, even though I was losing 3-4lbs weekly as my practice time went from 4 hours to 8, to 12, and eventually up to 15-20 hours a week. People did not talk to me very much, and as hooping was primarily done by woman in our tribe, I was sort of seen as a fly by night hooper hoping to meet a girl instead of as one of them. I was obsessed to say the least. I was going to every spinjam I could get to, I had even dropped every bit of money I had on buying an LED hoop so I could hoop in the clubs and get more practice time in. By the time I went to my first Wildfire in spring 2010, I had been so thirsty for what was next that I took classes with great people and hoopers like Caroleeena and Brecken, and I would often learn moves before they were done even explaining them.

I had dropped over 100lbs by this point and my health was vastly improved, but I had no idea how long I had before the next MS flare. I trained as hard as I did because I was living on what I saw as borrowed time. My disease still wasn’t managed and there was no medication I hadn’t tried that I could take -according to my doctor- that wouldn’t give me clinical depression as a side effect like my old meds had done. I was in the longest period of no attacks I had had in over a decade of fighting the disease but I knew it was only a matter of time. Sure enough in September 2010 I had another attack. MS, if you don’t know, is a variable disease with no way to predict what will be impaired, or how significant the loss will be, or even how long the effects will last, except to say that eventually the loss experienced would be permanent. That attack stripped away the last of the nerves that operated my legs and muscles. I had however, developed a lot of new nerve connections and a lot of new muscles so I was still able to walk, but only because of how in shape I was. Though I could walk, dancing and the level of activity I had become used to were not possible for several months.

In those months I was embarrassed to go to spinjams or events because I didn’t want to go back to being the kid who didn’t belong there. I had finally arrived before that attack and was a major hooper in the scene, and now I wasn’t sure what I could do. I decided start working with mini hoops because they required less body movement and I could still do them despite my legs. I put 70lbs back on during that time and things were not looking promising for my future. I switched neurologists however, and he put me on a new medication that would stabilize my disease but carried with it a 1-2% chance of death. I didn’t care. My art and my mental health mattered more to me. I needed to get back to hooping. I started the medication and once it stabilized me I began to train ridiculous hours to get back to my former level of functioning. I submitted my name for September Wildfire 2011 to participate in the performance class where I intended to not only be back to my old level of functionality, I vowed to be better and ready to début as a professional in my art, which by this point had become double mini hoops.

It’s now 2013, and I am still hooping. I have toured the West Coast introducing a brand new style of Mini hoop manipulation called Contact Hooping. I’m living in a dance loft called The Dragon’s Den, and helped found a brand new performance troop called Hydra in Lowell, MA. I do not hate my disease nor do I hate the potential side effects from the medication that has kept it controlled. I watch many talented artists and fellow spinners put off practice or pushing themselves because they have, in their opinion, many more days ahead of them. I train and push myself so hard because I know to live in the present and to not expect anything from tomorrow. It might be cliché’ but you don’t know how long you have to live, none of us do. I only know that nothing, nothing at all, gives me a better feeling than performing and dancing. I know I am in a newer art form working with minis and I am amazed that in 3 years I’ve become one of the leaders in my art by coming up with a style that is new and innovative and inspired by my journey. The transformative power of dance for me has been awesome, and I encourage anyone else who feels like I did -that they don’t belong and that their physical limitations will keep them from becoming “good”- stop trying to be good and simply do what you love as much as you possibly can, and trust that the rest will fall into place.

6 Responses

Thank you for sharing your story, Tyler! Truly moving. So much love to you!! Rooting for you all the way!

megan rose ashes / 2-8-2013 / ·

your story is inspiring. I love how the flow arts has the power to change lives. I’m glad you found your calling. I encourage you to keep sharing your passion with the world!

Pallas Athina / 2-17-2014 / ·

Tyler, thank you for sharing your story. Your class was one of my favorites at Wildfire. If anything, this makes you even MORE of an inspiration!

Gone Circus-ing! | ladyboyinadress / 9-8-2015 / ·

[…] For almost 6 years now I have been training in the circus arts. At 175Kg or 385lbs I was sick and dying. I was in grad school studying to be a Marriage and Family Therapist when I moved in with these nerdy friends who did this weird ninja Martial Arts dance stuff with fire. They and all of their friends were incredibly healthy and would do all sort of jugging and acrobatics. I became one of them. I quickly rediscovered a love for dance I had lost from childhood and battled it out with a hula hoop for 6 hours till I could finally get going for longer than a minute. It took time. I practiced 20 hours a week while working and in grad school. Life had shown me how to heal myself and in the process I discovered the art of dance and have been changed forever in every way from it. My journey was documented in the Flow arts Circus magazine F.I.R.E. http://fireartsmagazine.com/2013/01/healing-and-flow/ […]